We have arrived at Akron Children's Hospital,  Rheumatology clinic.. I'm so desperately hoping to actually get answers this time.  Typically,  we end up with more questions than answers.  I hope for Emmett's sake and for our sanity,  that we can find some help. **Thanks for reading**        -Lost and Tired Please join our Community Autism Support Forum Posted from WordPress for Android so please forgive the typos. Auto-correct and I don't get along very well.

Gavin is currently on his way to his 8th antibody infusion.  Grandpa is taking him today,  so I will not be documenting this particular infusion. I'm confident that Gavin will do just fine. The reason we are not going to be with him today is Emmett has a very important appointment at about the same time.  They are both at Akron Children's Hospital but on different floors.  My Mom and Dad have Elliott and will be hanging out with him today while we are gone.  Please keep Gavin and Emmett in your thoughts and prayers today.  :-) **Thanks for reading**        -Lost and Tired Please join our Community Autism Support Forum Posted from WordPress for Android so please forgive the typos. Auto-correct and I don't get along very…

Tomorrow is a big day for the Lost and Tired family.  Gavin will endure his 8th antibody infusion in the morning.  Lizze's father is kind enough to sit with Gavin tomorrow because Lizze and I can't be there.  Gavin's pretty excited that Grandpa is going to take him. While Gavin is receiving the antibodies he needs because he has no immune system of his own,  Lizze and I will be with Emmett. Emmett has his first appointment with the Rheumatologist in the morning.  He was referred there by his immunologist because she is concerned he may have Juvenile Rheumatoid Arthritis.  I think that Lizze and I both share this concern because Emmett complains about his joints and they are often inflamed and hot to the touch. There is also a…

This is more of a question really but also a sharing of my experience. Do any of your kids collect. Little treasures? I ask because of our 3 boys on the Autism Spectrum,  both Gavin and Elliott have a history of collecting.  Well actually,  in Gavin's case,  it's more like hoarding. Gavin will hoard all the Lego's, Hot Wheels and stuffed animals. In Elliott's case, he collects these little treasures.  These little treasures are usually,  odd little trinkets that have broken off of other toys.  From what I understand,  this is a way of him exerting control over his life,  and to be completely honest,  he has very little control over his life otherwise. I was just wondering if anyone else sees this type of behavior?  He's not stealing or…

Despite all the heartache and struggle, I wouldn't trade my wife and kids for anything in the world. Lizze shared her favorite song with me last night. I found the video on YouTube and thought I would share it with you all. It's a beautiful song by Christina Perri call A Thousand Years. It's from the soundtrack of Breaking Dawn Part 1. The words seem to cut a chord with my amazing wife. This is one of the most beautiful songs I have heard in a long time. I thought I would dedicate this to my beautiful family. I love you all and I'll love you for a thousand years :-) Thank you for sharing this song with me Lizze. I love learning new things about my best friend. :-)   [youtube…

This weather is taking its toll on Lizze. I have never seen her in so much pain.. When I say this, but I mean it literally. Every inch of her body is in excruciating pain.. She showed me her tremors last night and they are really getting bad.. The medication she is taking, I no longer seems to be working. The only thing it does is make her sleep. We have so much coming up this month and I have no idea how I'm gonna pull it off on my own. In Monday, my Mom is going to watch Elliott and Lizze's Dad is going to take Gavin to his antibody infusion. We have to be with Emmett at the Rheumatologist the same time Gavin has to be in Oncology.…

Lizze's parents have provided a much needed reprieve today. They have taken Elliott and Gavin for the and tonight. :-) Elliott has been driving everyone crazy with his anxiety. Gavin has been doing as well can realistically be expected. We needed this break because we have an unbelievable amount of appointments beginning this we and lasting through the end of the month. We will basically be moving into Akron Children's Hospital for the rest of the month, beginning with 5 appointments next week. Between Elliott, Emmett and Gavin, we have several appointments with the neurologist for seizure concerns. We're also hoping maybe we can get some more insight into Gavin's other neurological issues. We will also be seeing the Rheumatologist because of Emmett's rheumatological issues and Elliott's joints and tendons. Gavin…